Exciting news from New York… Nodes are growing!!!!

image

Lymph node showing Lymph Vessels Google images

Imagine my excitement this morning when I got an email from Jennifer in the USA. Jennifer had a Lymph node Transplant two years ago in New York, her surgeons were Dr Corrine Becker, Dr J. Levine and Dr Julie Vasile. The first part of her story is posted in “Two years after Lymph Node Transfer In New York“. She had some fantastic news which I will post in her own words.

image

Showing Lymphatic vessels and the valves that stop the back flow in the vessels.. Google images

“Follow up visit – 2 years post surgery:
Last year, in April, 1 year after my actual lymph node surgery, I had an MRI that showed the 3 nodes implanted and the very beginning of the lymph vessel growing. They referred to the nodes as small. But my surgeon explained that all nodes are small…
I had a 2nd MRI in March of this year and received results in May at my follow-up appointment. The news was very good! The nodes are visualized, there are actually 5 on the right side (including the 3 newly transplanted ones) and 2 lymphatic vessels connected and growing. From what I understand, a lymph vessel has reached half way down to my knee, and it is 1 millimeter in diameter. When I asked if that was a good sized diameter the Dr. responded, “That’s like a Highway!”
So, I left the appointment with a lot of hope. I was told that my leg was continuing to do well, the tissue feels very soft and moveable.
The reality though is I still wear a compression stocking during the day and a tribute sleeve at night. It was suggested that I try going without the stocking during the day at times when I am active, as in walking around, moving about, no long time standing/sitting in other words. Hard to do!! I am complying by not putting the stocking on first thing when I get up. I do morning routine stuff for about 1 hour. I am leery of this because I am so conditioned not to let any additional swelling take hold. I might take a bike ride without a stocking, and see what happens. Oh the freedom of not being encased!
In comparison between 2 years ago, pre-surgery and today: I can do so much more physical activity without ‘feeling’ the fatigue, achiness, swelling, etc. I forget what it was like. I just realized this last night, as it had been beastly hot here, and I am doing really well! Don’t get me wrong, it’s still there, the swelling, but it is definitely getting better. My shoes fit better, my toes aren’t sausages, the top of my foot has lost the camel hump (though edema is still trapped there) I see more definition to my knee, I see some muscle definition when I flex my leg (I have to flex pretty hard, but nonetheless!).

We are talking about a second lymph node transfer to the ankle region as well as some “mini lipo” to the outside of the leg where fat has deposited that doesn’t’ belong. This scares me, but I had a consensus of three wonderful doctors who agreed with it. No need to wear permanent stockings afterward, because this is not the ‘debulking’ method, but judiciously removing a little fat from the problem areas. I have an ugly lump where my thigh high stocking ends. It looks like a have a bagel around my leg….Ughh…
The MRI is a super valuable exam as it shows where the fluid is trapped and how much, as well as visualizing the lymph nodes and vessels. Also, it’s valuable for the lymphedema therapist to know this information as well, as they then know exactly where to send fluid for better results.
This is a specialized Lymph MRI I had done at Weill-Cornell in NYC.

image

Google images

So, all in all, I feel encouraged and I hope that you will feel encouraged and hopeful as well. We may never have what we had prior to Lymphedema but at least the worst of the nightmare is hopefully coming to an end”…. Jennifer

So it is true they really do grow!!! All of us who are waiting for things to happen Jennifer says, “If you can, to have as much lymphatic massage as possible. In the first few months of the transplant it’s very important. Even if you can self massage as best you can. You want to ‘wake up’ those newly transplanted nodes and get them working full time.”

Thank you so much Jennifer for sharing, it is so helpful to hear other’s progress. Anyone else who would like to share their experience please email me at helenbrd@bigpond.net.au I will change your name if you wish to retain your privacy.
Thanks Helen

9 thoughts on “Exciting news from New York… Nodes are growing!!!!

  1. I also heard that during time, it will continue to get better. This alone is a nice thought, since all the doctors I have met are just telling me that ‘it will only worsen during time’ … So only psychological this is a very soothing thought.
    Could I ask you, in case Jennifer will have a second surgery, where they will take the nodes from? Take care!

    • Hello Kharimata! Yes I have asked Jennifer that too but I am waiting to hear from her.. My Dr said if my Lymph nodes failed he could do it again and take node from the other side of the neck… But I don’t think that I would go ahead with a second surgery and I would worry about more nodes being used…hopefully I never have to make that decision!! I think improvement happens over years….it is very interesting….Helen

  2. As a lymphoedema sufferer in Australia I read your comments with great interest and hope! Having been told at a conference that node transplants are years away I feel more optimistic that one day (sooner) there may be some relief for this condition.

    • Yes they have started at Macquarie University Hospital and are part of a research study for two years.. They had their first surgery a year ago.. They do both liposuction and the LNT.. They have done most work with arms with I believe great success and have this year stated on legs.. Mine was the first leg LNT and a lady had had leg Liposuction.. It all appears to be showing great hope for the future Of treating Lymphoedema…. My blog will keep you up with the latest news especially in Australia.. Helen

  3. Pingback: Update from Jennifer | My Lymph Node Transplant

  4. Pingback: News from Jennifer … March 2014 | My Lymph Node Transplant

  5. Very exciting news!! Did your insurance company approve this procedure? Who are you insured with? I am looking to have the same procedure done.

    • Anthem blue cross/blue shield of CT….. surgery was covered, though Dr Vasile was out of network, but the hospital (NY eye &ear) was not. So still a chunk of change out of pocket!! From what I gather every case seems to be on an individual basis with insurance cover… Dr Vaisille and Becker are no longer doing this surgery in New York but Dr Smith and Dayan are …. Hope this helps Helen

  6. Pingback: Update for Sometimes Lymphedema just feels Awful | My Lymph Node Transplant

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s